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At Rare Diseases South Africa we place great value and emphasis on creating awareness, educating and sharing best practices amongst our network, our patients and society at large. We host a number of events throughout the year – some physical, some virtual and some hybrid – with the intention of ensuring that those we touch leave the session empowered with greater knowledge, empathy and understanding of rare diseases and congenital birth defects.


We also host regular community events and support our patient events as our priority is to ensure that no one affected by rare diseases has to walk this journey alone. Although individually rare, if we stand united, collectively we are powerful.

upcoming external fundraisers
No upcoming events at the moment

patient events

If you’d like to register for or participate in patient specific events hosted by family, friends and/or support groups, contact us.



Help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community by registering to be a RARE ACTIVist.

Whether you participate in one of our featured events or a marathon, triathlon, or bike ride of your own, by fundraising for Rare Diseases South Africa NPC you’re helping us empower patients through improved advocacy, navigation and community engagement.​ 

#Run4Rare #Swim4Sadie or #Ride4Rare with our Rare ACTIVist team and use your mobility to the benefit of those without it.

community events

Rare Diseases SA frequently hosts events in support of various conditions and or rare disease related causes. Contact us or follow us on Facebook for regular updates. 



We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.


Register for an upcoming webinar below, follow our Facebook page for updates and webinar details or enquire about hosting a webinar of your own with us. 


Rare Diseases SA not only hosts conferences (including RareX) but regularly participates in, facilitates and partners in a number of relevant conferences and exhibitions around the world. 

awareness months

Awareness months serve to draw attention to and create awareness of illnesses and conditions.


With more than 7000 known rare diseases there are a significant number of awareness days throughout the year. If you feel we have missed one, please let us know.

upcoming awareness months

No upcoming events at the moment
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